Introducing our Heart Stars

[Jo_BHF]

Afternoon all,

The eagle-eyed among you may have noticed that a couple of our lovely members have a special badge on their profiles, naming them as ‘Heart Stars’ – and I wanted to let you know what that means!

We’re looking out for active members of our new community to work with us as Heart Stars, to shape the community and help us make it a warm and welcoming place for people to talk about anything related to heart disease.

Our Heart Stars will be acting as friendly faces for members - helping people navigate through the community, referring people to existing threads that might be helpful, and telling me and the rest of the BHF team what we can do to make it a better experience for everyone.

It’s all very informal and dependent on how much time they'd like to spend helping us with the community, but it should mean that we have a great team to keep our new home ticking over well.

I’m sure the Heart Stars we’ve badged-up already will say hello, but if you’d like to join their ranks and be a part of our community team, I’d love to hear from you! Feel free to drop me a private message and I’ll happily tell you more

Thanks everybody!

Jo

[Geoff51 Heart Star]

Hi I am Geoff and I was given the honour of being one of the Heart Stars on the Community. I had a Heart attack 7 years ago at work as a baker at ASDA, was whipped up to Southampton General hospital at 6 am and was up in the CCU by 9am having had Angioplasty and 2 stents. Three days later I was home and 12 weeks later I returned to full time work. I retired last October at 65 having spent a lifetime as a Baker. I have continued regular contact with the BHF since and had an article about my experiences in Heart matters magazine and this led to a permanent record on my story in one of the excellent booklets that are available to members. If I can be of any help to other member please feel free to contact me on here and I will do my best to help you.

Geoff

[Bordercollie2 in reply to Geoff51]

Hi Geoff, I wonder if you might be able to help. My mum has recently had two ECGs. She has also had a test where she went on a cycling machine and had a heart scan. She was contacted by the consultant, which sounded slightly bizarre. He gave her some feedback and then phoned back 5 minutes later and said after looking at your ECGs, I’m a bit concerned, I’m going to organise an angiogram. My mum received the paper work yesterday and she’s quite scared about the risks and is frightened to have it done. She is currently saying she’s not going to have it done. What would this procedure show? And what could go wrong? Thank you

[Geoff51 Heart Star in reply to Bordercollie2]

Angiograms are uncomfortable but the results are good it tells doctors straight away if anything needs to be done and often will treat straight away with an angioplasty and stents if urgent. It saved me from permanent damage following my heart attack. Tell your Mum to go ahead it's worth it.

[Jewel7 in reply to Geoff51]

Hi Geoff, I am new to this site, I have already posted on here and had some lovely supporting comments from other users. At the moment my husband is going to see the cardiologist tomorrow he was given an urgent appointment. The echo shows a severe aortic valve regurgitation, a enlarge left ventricle, EF of 49.5. He is a type 2 diabetic but it’s well controlled and on ramapril. We are just wondering what they will do, the man that did the echo say it will possibly be a valve repair. As you can imagine we are very worried.

Thank you

[Jewel7 in reply to Jewel7]

Hi everyone,

We went to see the cardiologist today and he said my husband needs a replacement aortic Valve, I asked if it could be done the minimally invasive way. He said it would have to be open.

We are both so scared about the procedure and what the future holds for us.

Thank you

[Nic25 in reply to Jewel7]

Hi Jewel7. Happy to help if I can offer you any advice and have just direct messaged you.

It is a big and scary thing to deal with for us but, in truth, while it is of course a big and serious operation, for the surgeons heart valve replacement is a very straightforward, almost bread and butter procedure these days.

And as the TAVI keyhole variant is generally only used (at least on the NHS) for those who are too sick/unwell to cope with open-heart surgery, in a way it's positive it's not an option for him, though I appreciate it probably doesn't feel like that right now!

But good luck. There's lots of people on this site who can help I'm sure, but happy to try and help if I can.

Nic x

[Jewel7 in reply to Nic25]

Thank Nic your message is so encouraging. My husband has to have an angiogram and a Doppler first.

Thank you

[skid112 Heart Star]

Hi, some of you will already know me. I am Mark and I too have the honour of being a Heart Star. My heart attack occurred 26th October last year, rapidly followed by quad bypass 4th November, a big hearty thank you to the Royal London and to Barts. I was home on the 9th, partly due to stubbornness. I am still slowly recovering but am back in full time work and slowly notching up the old exercise regime. My plan is to walk Hadrians Wall next year to raise funds for the BHF.

I am here partly to help others, partly to help me and partly to help knowledge grow of the enormous help the BHF and the NHS do for other heart sufferers.

Echo Geoff's last sentence, if I can be of any help then drop me a message, or stick something on the forum, usually around (wife says too much!!)

[alheart]

Hi Jo,

Is the "Heart Star" the same as being a "Braveheart" ambassador up here in Scotland? It does look very much like a similar remit

If so, could I have "Braveheart Ambassador" or "Heart Star" badge profile against my name?

Don't care that people will know that I am in Scotland,

However, I do care that I am part of a charity that caters for the whole of the UK and not just the home counties as a lot of other "national" charities do.

Please don't become one of them!

Thanks

Alastair

[chrissyw1961 in reply to alheart]

Do you know of any charities or people who help severely disabled people move flats. For health reasons please.

Had 5 Major heart attacks between 5th and 26th October.

Now having to move to move to ground floor.

Thanks Alistar

[Hidden]

Hello, please kindly give me more information about joining the team of Heart Stars. I may need some informal training. I am available full time as I am on retirement and an under Cardian Rehabilitation Programme. I enjoy reading and writing as a recreational hobby since my school days. My other hobbies are walking, keeping fit, healthy diet, slimming and wellness coaching, community networking and charity volunteering

[bruceDavid]

thanks for all the heart stars cheers

[Harrison4]

Hi Jo how do I access this site so far I have only been able to get here via the emails sent to me

Also there is a group I sW mentioned earlier on Facebook but can’t find it now 😊👍🏴󠁧󠁢󠁷󠁬󠁳󠁿 8 weeks post ha and stent

[MyAbu]

I am new to BHF and would like to learn from women as have been reading the book The Invisible Women and the gender data gap- how women are often misdiagnosed because all the data is collected from men- do you have a sub group of women?

[bantam12 in reply to MyAbu]

There are lots of women on here who have struggled to be taken seriously and to get a diagnosis and treatment, it's well documented that women are ignored and treated differently to men.

[Sunnie2day in reply to MyAbu]

Welcome to the forum!

Dunno about any sub-group here as most of the posters here on the heart pages are happy to say if they're male or female - makes it reasonably easy to note differences in experiences (if any).

I haven't read the book you mention - I'm currently reading a book one of the other ladies here posted about and am finding it a very helpful read indeed - A Woman's Guide to Living With Heart Disease, by Carolyn Thomas. She is an American with some rather impressive credentials (among them creator of the blog Heart Sisters, and a graduate of the Mayo Clinic WomenHeart Science and Leadership Symposium). Although a US-centric book, much of what I'm reading in it is applicable to us UK Lady Hearties, with sections specific to female heart health.

[Becksagogo]

Hello. Last year I had open heart surgery during which I had an aortic valve replacement, a mitral valve repair, a tricuspid repair and a cardio-aversion. A couple of days after, I had a pacemaker fitted.

This year, in June, I had a mitral valve replacement, by TAVI.

Despite all of this surgery I am still very breathless and find things like climbing stairs and walking up inclines, lifting or pushing things nigh on impossible.

My Consultant has written to my GP advising that he has put me forward to have an Edwards in the Tricuspid ring under GA with TOE guidance.

I have scoured the internet but cant find anything that is simple enough for a layperson like me to understand. Are you able to explain so that I can ask questions at my next appointment.

I am 64 years old and it is likely that some of the problems with my heart was caused by radio therapy given almost 40 years ago to my chest area and 40 years of smoking. I have been able to get back into full time work.

[Eva58]

Hi, I have AS. I have been told today I need valve replacement surgery. I am obviously pretty shocked. I would like to speak to others who have positive outcomes please. Thank you

[MumaLines]

Hi Jo, I would love to be a heart star. I know how scared some of the members are especially pre Bypass Surgery and definitely help to support after surgery. This forum is a life line.

[KIMMY60]

Can you tell me why my specialist insists I stay on betablockers when I have a low heart beat and low blood pressure and it makes me feel so weak .I have occasional very fast heart which does correct itself eventually and I'm normal on between I feel like he's killing me at the moment

[Miyuki2023]

I recently had an acute myocardial infarction, an anafalactic shock within 2 hours of having 2 stents fitted and a hematoma to my right arm after the operation and I have been left to manage my emotions without support from my gp and have not heard from the heart team until 2 months after being discharged from hospital! Consequently my mood has hit rock bottom and I feel as though I am in limbo and am very anxious about the future! I will receive a follow up phone call on Thursday 20th July, and have lots of unanswered questions. I could not join the heart rehab course due to back issues and have what I believe may be symptoms of angina and don’t even know if I am supposed to use my spray as these symptoms are not as painful as the heart attack. I am due back to work in a very intense social care field on the 31st July and am anxious about returning and currently feel very lost! I need support from somewhere! Can I return to having shiatsu and massage yet? Unanswered questions! I need support from somewhere before I hit depression again and to lift my low mood. Mary-ann